'Death and Dying' Defines Penn Seminar

June 15, 2006

The subject didn't match the glorious spring weather on a recent Sunday at the Biomedical Research Building at the University of Pennsylvania.

"Personal Experiences With Death and Dying" was the subject of the opening session at a two-day symposium sponsored by the University's Center for Bioethics, which recently marked its 10th anniversary with the symposium's umbrella theme of "The Legacy of the Terri Schiavo Case: Why Is It So Hard to Die in America?"

With pickets circling outside under the watchful eye of the police, attendees at the kick-off conference gathered to consider how the modern culture deals with the inevitable.

The panel addressing that included Michael Schiavo, the husband of the late Terri, who died March 31, 2005; Julia Quinlan, mother of Karen Quinlan, whose death opened the floodgates on issues of death and dying in 1976; David Casarett, M.D., medical director of the Palliative Care Service at the Philadelphia V.A. Hospital; and Rabbi Gerald L. Wolpe, rabbi emeritus at Har Zion Temple in Penn Valley.

The Schiavo case - with all its dramatic ramifications about a husband's decision to remove nutrition and hydration against the wishes of Terri's parents - was the starting point for the discussion, moderated by radio personality/lawyer Michael Smerconish.

"It was reassuring that 83 percent of Americans agreed with my decision," said Michael Schiavo, the registered nurse who became an iconic figure during the agonized battle over his comatose wife's fate.

Schiavo ultimately won the right to withdraw nutrition and hydration from his wife despite a highly charged backlash from the president, the pope, the majority leaders of the U.S. House and Senate, the governor of Florida and an assortment of religious right leaders.

"Americans really don't want government in our family matters," said Schiavo, who insisted that such deeply personal decisions are purely family matters.

Schiavo has started terripac. com, an Internet political-action committee dedicated to holding accountable politicians who attempt to force government intervention into family tragedies.

In the Spotlight
It was just such a family tragedy that catapulted soft-spoken Julia Quinlan into the international spotlight when she and her husband petitioned the New Jersey courts to remove their daughter's feeding tube when she was in a persistent vegetative state.

"We were a quiet suburban family who suddenly found our daughter's high school photo plastered across the front page of newspapers around the world," relayed Quinlan. "We could not have guessed how our decision would affect future right-to-die cases. For us, it was a question of the inappropriate use of modern technology. Karen's constitutional right to determine her own fate - transferred to her family when she became incompetent - was the central issue for us."

Julia Quinlan has gone on to found a hospice in her daughter's honor and memory.

After Casarett depicted the physician's viewpoint - namely, how doctors yearn for quiet, dignified endings marked by accord and family unity - Wolpe spoke eloquently and candidly about his own awakening to the medical establishment, and its interaction with families of the seriously ill.

"My wife collapsed 20 years ago after two brain aneurysms. I had been a rabbi, had done extensive counseling, but it was still a disaster for me. How my life changed in that moment, and in these 20 years," said the rabbi, who is also a leading expert in bioethics.

Wolpe served from 1996 to 1999 as chairman of the Advisory Committee of the Bioethics Center at the University of Pennsylvania.

One of his sons - Dr. Paul Root Wolpe - is an assistant professor in the department of psychiatry, and also works as a Senior Fellow at Penn's Center for Bioethics.

The elder Wolpe focused on how chronic illness can be devastating to a family, and how caregivers are often the overlooked foot soldiers in the health-care dynamic.

"We look at the person in the wheelchair, but generally not at the person pushing the wheelchair," he said.

The rabbi argued for the vital place of family in acute and chronic illness: "I'd fight vigorously against any institution that thought it knew best."

Asked later about how Judaism might have viewed a situation similar to Schiavo's, Wolpe expressed the opinion that there is no strict Jewish position that life must be continued under any circumstances.

"To a certain point," he explained, "you try allowable X and Y treatments, and then you let her rest in peace."

The rabbi also expressed a deep concern about the lack of a ground-swell outrage over the government's inappropriate intervention in the Schiavo case.

Stated Wolpe: "There was a lack of leadership for the cause of personal control, and that was - and is - alarming."